Cardiology

We had an early morning appointment with Cardiology today and both of my kiddos were getting a full workup. I wanted to make sure Kamryn's heart is perfect so I never have to wonder... and my mind was put to ease. Her heart is wonderful!

During Kamryn's echo, we were hanging out watching Harry Potter. Then Owen had his turn and chowed down on pretzels while getting his echo done. My kids are SO easy!!! I started feeling sick to my stomach when the echo tech seemed like she was concentrating on Owen's Tricuspid Valve.

We headed back into our room and waited for Dr Stock. He started by saying "Kamryn's heart is great! I have no concerns!" Then came the "How's Owen been doing?" You don't want that question from the get-go. Besides the crummy stomach bug that wiped him out for over 10 days, he has been doing great!

He has been eating .. a ton! If he would swallow the amount of food that goes into his mouth, I wouldn't use his gtube all day. He eats that much! He wakes up asking to eat. He always asks for random foods.. a hamburger, ice cream cone, peanuts, carrots, cheetos, Diet Dr Pepper, almonds, and it's always at random times throughout the day. It's constant and I am always scooping his cheek out so that he can stuff more food in. It's practice.. and I figure he has to feel great to have such a monsterous appetite, especially with me feeding him 1300 calories through his tube during the day.

Owen is also walking more, playing a ton, taking a small afternoon nap, wants to go shopping and get outta the house, ect. His oxygen saturations have been okay on a liter of oxygen and he turns blue less often (than before his Tricuspid Valve repair in February).

Dr Stock said his Tricuspid Valve, that we just fixed, is leaking more. UGH. His liver is down, which he said wasn't good, and I don't understand the whole liver part of it anyway. His fraction gradient, the pressures backing up in the Right Atrium were lower than his last echo, which can be positive, but we just don't know. His murmur was much louder this time around, which indicates more regurge into the Right Atrium.

Dr Stock said we won't know anything for sure until his cath and MRI on July 28th. His Tricuspid valve is still tight, but the amount of backflow is up. We don't know what Dr Hanley will want to do, but I am going to be so heartbroken if we have to put Owen through another TV surgery to replace his valve. Heartbroken.

We discussed the Fontan and Dr Stock was talking about the different ways to go about it and what Dr Hanley is going to look for in the MRI and Cath. The entire room started spinning, I felt every ounce of blood rush out of my face and I lost it in the garbage can under his sink. He, of course, made sure I was okay.

I don't know what happened. Everything just hit me at once. I wanted to hear that his heart is doing great.. his valve leakage is just as we wanted it.. he is on track for the Fontan. I didn't hear any of it. It was a blow. Then the worst part of it, for me, is not knowing what will happen in July.

I came home and crashed. Realized I had a fever, chills, achy body and didn't want to get out of bed. Am I sick? Maybe I have a bug that caused me to puke. Maybe it is the Progesterone I am taking to regulate my cycle. Maybe it was the combination of everything and getting news that I didn't want to hear. I have never wanted to get out of the cardiologists office so bad.

I am so glad Kamryn was home with us today to entertain Owen and help take care of him. I am grateful that she is so healthy and smart! I am going to do my best not to worry myself crazy over the next two months until we leave for Stanford. We will just enjoy our summer vacation and I will just continue to pray fir Owen's heart. It's all I can do.

My kids stats from today's visit...

Kamryn: 5'3" -- 102lbs -- sats and blood pressure fantastic!
Owen: 38" -- 30lbs -- sats at 80% on 1 liter -- blood pressure 70/40 (norm for Owen)